- In what ways have Cushing's made you a better person?
- What have you learned about the medical community since you have become sick?
- If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
- What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend? challenge with Cushing's? How have you overcome challenges? Stuff like that.
- I have Cushing's Disease....(personal synopsis)
- How I found out I have Cushing's
- What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
- My challenges with Cushing's
- Overcoming challenges with Cushing's (could include any challenges)
- If I could speak to an endocrinologist organization, I would tell them....
- What would I tell others trying to be diagnosed?
- What would I tell families of those who are sick with Cushing's?
- Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
- What will happen if I'm not cured?
- I write about my health because…
- 10 Things I Couldn’t Live Without.
- My Dream Day.
- What I learned the hard way
- Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
- Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
- The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
- Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
- 5 Challenges & 5 Small Victories.
- The First Time I…
- Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
- How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
- Why do you think Cushing's may not be as rare as doctors believe?
- What is your theory about what causes Cushing's?
- How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been
- What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals?
- What new goals did Cushing's bring to you?
- How do you cope?
- What do you do to improve your quality of life as you fight Cushing's?
- Your thoughts...?
- ► 2012 (92)
- ► 2011 (70)
- ► 2010 (32)
The New Jersey Department of Health passed a waiver in October of last year that allows ambulances to carry Solu- Cortef, for the purposes of treating an adrenal crisis. As a result, New Jersey ambulances can be better prepared to treat adrenal insufficiency.
This news was brought to NADF by Karen Fountain of the CARES Foundation, who has been helping push state health directors to accept protocols to help treat adrenal insufficient patients during an emergency.
Adrenal insufficient people in New Jersey should contact their local EMS to make them aware of the waiver, and encourage them to carry Solu-Cortef in their ambulances.
The hope is that other states, and eventually the entire country and beyond, will start having their ambulances carry the needed medication to treat adrenal crisis.
- The study objectives were to characterize pharmacokinetics and examine disease control following 6 months dose titration.
- Serial profiling was obtained at baseline (conventional glucocorticoid) and every 2 months.
- Twice-daily Chronocort® was initiated: 20 mg at 2300 h, 10 mg at 0700 h.
- Dose titration was based on clinical status and optimal hormonal ranges (17OHP 300-1200 ng/dL, normal androstenedione (males: 40-150, females: 30-200 ng/dL), with androstenedione prioritized.
- Chronocort® cortisol pharmacokinetic profile was the primary endpoint.
- Secondary endpoints included biomarkers of disease control.
- A total of 16 adults (8 females; age 29 ±13 years) with classic CAH (12 salt-wasting, 4 simple virilizing) participated.
- Conventional therapy varied (5 dexamethasone, 7 prednisone, 4 hydrocortisone).
- Chronocort® cortisol pharmacokinetic profile approximated physiological cortisol secretion.
- Ten patients required Chronocort® dose adjustments (decrease in 8, increase in 2; mean hydrocortisone equivalent dose conventional vs 6 months: 16.1 ± 6.4 vs 14.7 ± 6.4 mg/m2).
- Serial androstenedione levels were in the normal range in 8 (50%) of patients on conventional therapy compared with 12 (75%) on Chronocort® at 6 months.
- The majority of patients on Chronocort® achieved 17O HP levels within the normal range, rather than within the mildly elevated range currently used for management.
- At 6 months, Chronocort® resulted in lower 24-hr (P=0.02), morning (0700-1500; P=0.008), and afternoon (1500-2300; P=0.03) area-under-the-curve androstenedione compared with conventional therapy.
- No serious adverse events occurred.
- Common adverse events were headache, fatigue, early awakening, and anemia.
- Three patients had unexpected carpal tunnel syndrome, which resolved with wrist splints.
- Are you carrying adrenal Cushing’s syndrome without knowing it?(cushieblog.com)
- ARMC5 mutation identified in patients with macronodular adrenal hyperplasia(2minutemedicine.com)
- [PubMed - in process]
- [Available on 2013/12/1]
From Adrenal Insufficiency United
A video about Adrenal Insufficiency and the need for emergency protocols.
An injection which costs about $10 could save a life.
Please help us make sure it's available to all who need it.